Alopecia World
www.alopeciaworld.com
Xeljanz Users...Let's Stay Connected Here in 2016!
I want to thank so many for following my discussion link, "My Stanford trial experience, Part 2 (Xeljanz)" throughout the bulk of 2015. I began participation in the trial in late January, got my first RX for Xeljanz in February, and started to see the first signs of regrowth 3 1/2 months in. After the trial ended, I opted to stay on the drug, and now I am a post-trial patient for the doctors at Stanford. I will continue to fly up there from Los Angeles once every 3 months or so to provide them more data with the hope that maybe the FDA will one day approve Xeljanz for alopecia! As long as my bloodwork remains healthy, I anticipate staying on the drug for the forseeable future. I have had no negative side effects on Xeljanz since I started. If anything, it has calmed down my overactive immune system and possibly helped settle some food sensitivities I had been developing last year.
I am starting this discussion because I really hope those of us who are currently on Xeljanz (or are about to begin) will want to keep tabs on each other. I have read some posts on other links where patients stopped or reduced the drug, and their hair began to quickly fall out. However, I DO know that alopecia can go into remission. It did for me from early 2009 until the end of 2012. Four years of spontaneous remission! With no drugs. I hold onto hope that Xeljanz may help push some of us into remission, allowing us to taper back on the dosage for some time without devastating relapse. Maybe that's not in the cards. In any case, we are the lab rats right now! So, we need to look after each other and share our stories--whether they are good or bad. My attached photo shows me a week ago--12/15/15. I will continue to post more photos as time goes by. Please all do the same. Let's band together in 2016 and get some viable treatments approved for this cruel disorder!
XO
Susan
Replies to This Discussion
-
Permalink Reply by Xeljanzmiracle on
-
Hey Susan, forget your hair! What type of diet and exercise program are you on? Your ARMS look so toned, lol!
-
Permalink Reply by Susan McAdams on
-
Aw, that's really sweet, Xeljanzmiracle.
I've been an athlete pretty much my whole life--was a competitive 100m hurdler in high school and college. Now, I just mix it up as much as possible. Exercise has also been a life-saver for me during these emotionally hard years. A natural antidepressant! I highly recommend to anyone who has been feeling down to just get out and do SOMETHING physical every single day.
But I'll share a little secret with you--the fastest way to get your arms in smoking hot condition? Swimming laps! Lots and lots of freestyle. There is no other exercise that compares.
-
-
Thank you Susan. I plan to rejoin a gym that has a pool. I love the water and miss swimming.
-
-
It doesn't surprise me, then, that you're seeing anything--as minimal as it may seem--one month in. I really don't know if there's any correlation to age/gender and regrowth time, but anecdotally, younger patients and males have been reporting faster results. Just look at Dr. King's "Patient Zero." He had a FULL head of hair in less than 10 months. Starting from AU. There's another young man who visits this site who is in a similar boat. He and I communicate privately, and he sent me a selfie the other day, and he looks fantastic.
So, Mr. Sultan...I think you should go buy yourself a bitchin' electric razor. I predict we will be getting a fantastic selfie from you soon!
-
Permalink Reply by sultan h on
-
thanks Susan I will :)) Lol
now I saw 2 very small white hair in my left eyelash
good start progress , so hope my all my hairs grow up soon
and I will send my photo soon.
-
-
Updated::
I have been on Xeljanz around 8 weeks
I have a hundreds of white hairs in my scalp ( fuzzy) and 10% regrowth in my eyelashes
that's really nice waiting to becomes dark , no side affect need more patient only ,
hope to continue regrowth all of my body . ohh I forget I'm on 2 pills a day ,
and thanks to all
-
Permalink Reply by Patricia on
-
Hello Susan thank you for all the information!
I am soon to start a topical Xeljanz (at long last I have found someone who will prescribe and also a compounding pharmacist who can prepare the tablets for use).
I haven't taken any tablets so it will be interesting to see if this cream only will have any effect.
If the group is interested I will keep updating.
-
-
Yes please keep everyone updated!
Thank you, and good luck to you, again!
-
-
Please let us all know how the cream works. I am really hoping it works and doesnt have side effects !
-
-
Hey Everyone--
I was back at Stanford at the end of April, and still continuing on Xeljanz twice a day as before. Not a lot of new information to share, except Dr. Ko said the scalp biopsies that patients in the trial provided are being used to analyze RNA strands and a LOT of genetic information. This has given the doctors at Stanford much insight into who may or may not respond to Xeljanz, based on their genetic makeup. They hope to publish something sometime next year. The only other new info I learned is that other drug companies are working to develop their own JAK's. So, we will see what this all amounts to and if we can ever get Xeljanz FDA approved in the near future.
I have a question about RELAPSE...I know there have been a couple women on ADML's site who have experienced some new hair loss while being on Xeljanz for several months and getting lots of new growth. But those posts did not have much follow-up. People have been asking me about this. It seems to happen more commonly with women. And those who posted in ADML's site admitted they were under a lot of stress around the time of relapse.
Does anyone have a story to share related to relapse while on Xeljanz? If so, how severe, and did it grow back? Did medication dosage need to be changed? Any info is valuable for us all.
Thanks,
Susan
© 2024 Created by Alopecia World.
Powered by
